Back to basics – understanding lived experience and intersectionality in health and care

It is well established that communities and people who have lived experiences should be involved in the design of health and care services and policies. NHS England Guidance on Working in Partnership with Communities highlights financial benefits as well as improvements to health and quality outcomes. The King’s Fund publications and blogs reinforce this message by challenging systems to work differently with local communities. Could this involvement be taken further? Some people argue that intersectional approaches can be used to understand people’s lived experiences of care and tackle ethnic health disparities. These approaches enable health and care providers to shift their focus away from people’s behaviors and toward identifying and addressing working methods that reinforce inequalities.

Our conversation about lived experience and intersectionality inspired this blog. I met the manager at this year’s GSK Impact Awards. I shared with him my interest in the ways in which health and care providers can work with ethnic minority groups who have lived experiences of care services in order to address inequalities of access, care, and outcomes. I also mentioned gender and intersectional perspectives. I admit, it was quite a mouthful. The manager said, “I’m so tired of hearing people talk about intersectionality and lived experience in the health field – what is that? I also laughed because it wasn’t the first time I’d listened to this response. As professionals, we often use concepts that are confusing to people outside of our organization or sector.

It is important to note that people from diverse cultural, national, and other backgrounds might not have professional or expert knowledge of how systems operate. Still, they can provide valuable insight into the design of policies and services that address ethnic health disparities and meet their needs.

What is lived experience, then? The concept of lived experience is nothing new. The idea of lived experience is to understand people’s experiences with services and what they take away from them. People with lived experiences bring a unique perspective to the design of services, health care policy, and delivery. Discussions about working with people who have lived experience need to be placed within a context of health and care that often identifies a premium on professional expertise and quantitative data. It is even more crucial for ethnic minorities whose contributions to policy and care are often marginal, contributing to poor health and care outcomes. Indeed, people from diverse cultural, national, and other backgrounds do not necessarily have professional or expert knowledge of how systems operate. Still, they can provide valuable experience to help design policies and services that meet the needs of individuals and address ethnic health disparities.

Professionals in health and care recognize that the experiences of people with care vary based on multiple intersecting variables. Intersectionality is a framework that helps service providers better understand the impact of different factors such as race/ethnicity, age, and socio-economic factors. It also includes gender, culture, and religion. A recent report shows, for example, that women of Black and Asian descent are more likely than others to die during childbirth or receive inadequate care. This report shows that these disparities are the result of multiple structural and socio-economic factors that interlink to increased mortality rates. A multi-faceted approach helps providers understand the factors that lead to inequalities and develop care strategies.

By shifting the focus away from individual behaviors and towards systems processes and practices, services can challenge care models that see people of ethnic minorities as victims without agency.

Intersectionality offers healthcare providers the opportunity to identify and eliminate institutional structures and practices that create barriers to meaningful engagement and service delivery for people from marginalized communities. Services often focus on the way people’s backgrounds and behaviors shape their experiences and how they access health and care. By shifting the focus away from individual behaviors and towards systems processes, services can challenge care models that see people with ethnic minorities as victims without agency. People from ethnic minorities are more active in their interactions with services. They have choices in their health care, and they can draw on sociocultural resources in order to navigate the healthcare system.

After much discussion, my manager and I decided that while concepts and language might change over time, the principle of engaging people who have lived on the margins will remain a priority. Organizations must consider what it means to have an intersectional perspective and to create an inclusive environment where marginalized groups can be heard.

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